Absorbing.....

Tuesday, April, 2nd-
We started our late morning at the University for the day we have waited a few weeks for, Danielle's MRI and MRV Scans. She was a very happy girl especially considering she had, had nothing to eat or drink since the night before. She is such a trooper. I had her covered pretty good trying to keep as many hospital germs away as possible during our wait.

The Anesthesiologist came out and spoke with me just before Noon and explained their game plan. Shortly after Noon they took us back. I was a little upset as I think the Resident tricked me a little bit. I carried her in the room and he asked me to lay her on the cart so he could hook the leads up to her. Literally a minute after I laid her down while she was fussing and squeezing the heck out of my hands, he put the mask on her and she was out. I was mad, mostly because this is something that Daddy usually does and not something I am comfortable witnessing, but also because I had no warning on what he was about to do. I knew she was in good hands, but them drifting her off to sleep just went quicker than I imagined.
I headed for the waiting room and opened my book. 2 hours later the Anesthesiologist came out and allowed me to escort them up 2 floors to 1st state post anesthesia recovery, but once we arrived I had to wait outside the doors while they made sure she was stable and began to wake her up. Something about sitting outside these doors made me a little uneasy, yet it was not my first rodeo so I think this is when my internal panic set in and I'm not sure why.

I got to see her about 20 minutes later. She opened her eyes when I said her name, it melted my heart. I cuddled her for 30ish minutes then we were moved to second stage recovery. The Neurosurgery Resident on call came up and reset her shunt setting and hungry girl finally took a few ounces of her bottle and about 430 we were discharged. It was a looooong day, but went pretty good. I left there with no idea of what those scans looked like, which I knew this is how it would be; but it was a lot harder than I anticipated to not know anything for 24 hours.
What I didn't know at that time was that her Neurosurgeon, by the way have I mentioned how absolutely AMAZING he is.......anyway, he was watching her scans live, as they were happening off and on to make sure it was nothing emergent and that it was going as he expected. Seriously amazing, he is incredible and we are SOOOO blessed.

Wednesday, April, 3rd-
Today, we headed back to the University to meet with our Neurosurgeon for the results. And I was nervous. I was way more nervous than I have ever been before and I have no idea why other than the obvious, I only wanted to hear positive results. It was a very unsettling feeling. I am EXTREMELY thankful for my Aunt Ellie, she is my rock and such an incredible support system and always has been. She works at the U and was more than willing to attend today's appointment with me as another set of ears and I am so happy she was there.
We arrived and first met with the Resident. This is the same MD Resident that was in the OR for her first surgery, took her stitches out and saw us in the ER, so we are getting more comfortable with him. Our doctor does not have us see Residents except for this time managing her incisions post surgery before we actually see our doctor. Danielle had a stitch in her top incision that was poking thru, I brought this to his attention so he took care of it and cut it out. She was more mad at the sound of him opening the packages of iodine and gauze pads then she was him cutting the stitch out, silly girl.
He also verified her current shunt setting and checked it with the gauge so we knew 100% that it was ok and on the correct setting before her next surgery.
Our Neurosurgeon came in shortly after. He stood in the door and said her scans went well, he did not see anything that he did not expect to see. Yet she has far more fluid in the base of her brain in the 4th ventricle than we initially thought and it must be gotten rid of. I agreed.
He then sat down and explained more to us and showed us the scans. That is when he explained that while the scans were happening he was watching off and on to make sure it was going how he wanted. That right there says a lot about this doctor.
The MRI showed us the fluid filled ventricle from many different views. He then pulled up the MRV. Basically the MRV scans look similar to the MRI scans yet they show every single vein in her brain. He was able to see her main artery that goes from the front of your head all the way over the top of your brain and down to the back of your neck by your spinal chord.
Here are a few pictures of the artery I am speaking of. This picture is not Danielle:

Because of where the veins are located in Danielle, the only way to get to the 4th ventricle to do this surgery is to go under this main artery. Yes, I said under. He will go under this main artery, in the base of her head near her spinal chord to get to the 4th ventricle to drain the fluid. He even mentioned that he may need to place a tube for a short time in case he needs to go back in and drain more. We are uncertain at this point if this fluid is accumulating or not. We initially did not think it was, now we are uncertain.
This. Is. Serious.
This will be a 7 hour surgery, if all goes perfect, otherwise it could very well take longer. It will take 2 hours alone just to get her set up for surgery once in the operating room. This mama is nervous. I am totally trusting of this Neurosurgeon and he seemed very confident today. As he told me this is serious and someone needs to have broad shoulders to handle it and he pointed to himself and said he does.
After surgery there are a lot of unknowns. There are risks, a lot of them. Pretty similar to the same risks he took before but on a higher level. Because he is unsure of what type of scar tissue he will see from her previous surgeries, that may change things once he opens her up. He may need to move a couple smaller veins, he mentioned that he does not want to place a shunt, that we will not know until he is in there. Infection is a huge risk as well as Menengitis. There are far more risks to scary to even think about at this point. We know she is in good hands and that is all that matters.
She will be in the PICU for at least a week, could be longer depending on how surgery goes. The back of the brain where he will be working in controls everything on her. Heart, Respiratory, Swallowing, Speech, Fine Motor....everything. We pray this helps every single one of those functions, he had to tell me it could also inhibit them. We pray for the best.

I cannot thank my Aunt enough for being there for me today. It felt so good to be able to look over at her for a comforting person soaking this in with me. Thank you Ellie.
So what now....we prepare. There virtually isn't anything to prepare that is different, other than to keep our girl healthy, continue to pump her up on her vitamins and give her lots of lovin' that she more than deserves. It is the worst feeling as a mother knowing that your child is about to go thru something that I can't even explain to her. Yet, it is a bittersweet feeling knowing that this is for her future, and she is in the hands of the best.

I'm nervous. My nerves are shot. We will get thru. She will come thru and be able to speak her story one day. She will be able to thank her doctor one day with her own words. We hope, and pray and hold on to our optimism that this, is for the very best. Only the best for our daughter.
April 15th, will be the day Danielle's life will begin, in the most positive ways ever. We are dreaming of this already.~